A Run Down Memory Lane

image

I just got back from the coolest trip. I met Zeynep Madak-Erdogan on twitter a year or so ago (thank you #bcsm!), and when I saw that she was a breast cancer researcher at the University of Illinois, we quickly bonded as I told her about my time there. In the months since, she has asked me to work with her on a few different projects, and she even invited me to come to campus as the Cancer Community @ Illinois starts a new cancer research advocacy group!

I’m going to get some of the “official photos” soon and I’ll share a little of the more science-y stuff I did there, but until then, the fun stuff! Zeynep and the rest of the cancer working group set up a great itinerary for me, but she was sure to ask if I wanted her to arrange any specific meetings. My only request was dinner at Papa Del’s, which apparently made me one of the cooler campus visitors and showed my UIUCroots to anyone who hadn’t already heard I was an alum. We drove around campus, and seeing the buildup of research park on the south farms where there used to be nothing but sheep was probably the biggest change. Fortunately (or unfortunately?) there are still some farms on the other side of First Street, so I immediately recognized the familiar smell of spring on the South Farms.

My other request was a slightly later start on the second day so that I could get in a run to visit some of my old haunts. Of course, as a student, I wasn’t a runner, so roller blading or taking the Red bus would have been more accurately nostalgic way to get around campus, but I enjoyed taking my new habit to my old stomping grounds.

image

Of course I had to snap a quick picture with the Alma Mater and on the Quad, which like the Union and much of campus, were as I remembered them. (My apologies if this one is upside down. WordPress and I can not agree on how to make it right side up on all devices. Agh!) At one point, we were noticing all the new hipster food trucks near the Beckman Institute and I commented that the only food truck in my day was the weird smelling silver truck outside Noyes Lab. When we walked past that spot moments later, Derald’s Catering Truck was still there, as if it had never moved, save to get a snazzy new paint job on one side!)

image

This is the entrance to one of the new buildings on campus– the Carl Woese Institute of Genomic Biology. Besides the cutting edge science that goes on inside the building, the art of science is prominently featured throughout the building with temporary themed exhibits. These three sculptures outside the building show tRNA at three different stages.

imageGreen Street looked different, too, with many high rise buildings towering up over the familiar streetfront stores and restaurants. But IGB is probably one of the shortest new buildings on campus, built only a few stories high because of its proximity to the Morrow Plots– the oldest continuously planted experimental cornfield in the United States. And as all my fellow Illini friends know, you can’t throw shade on the corn! (OK, it’s a long video, but gives you the whole story of the Morrow Plots and why the Undergrad Library is underground. The song starts at around 8:30.)

I had a great visit and especially enjoyed my run down memory lane. Stay tuned for some pictures of me dressed like a grown up and being all professional and everything to find out why I was actually there!

 

Share

My Rock ‘n Rollin NED-iversary

image

I know it’s a little overdue, but I thought I should show you how I spent at least the first few hours of my NED-iversary. Since Emma Clare had to be in Leesburg super early for a gymnastics competition, as soon as I fixed her hair, I kissed everyone goodbye and headed to take the metro downtown. It was a great day for running, and I was expecting lots of music and mayehm along the course. The Rock ‘n Roll series didn’t disappoint– bands most every mile and lots of people cheering, some from their stoops while drinking their (morning) beer! Besides all the water stops, there were plenty of people handing out water, champagne, beer, and even barbecue! But what really distinguished this half from the Nike half I did two years ago was the hills. Oh, the hills. The Nike course was so flat that the slight, barely distinguishable incline was the only “hill” I can remember. This course, on the other hand, had not only a steep hill that was over a half mile long, but lots of other decent hills, too. And of course, that one just before the finish. Awesome. But I ran this one without having to give myself any pep talks, and even made it up all those wretched hills, finishing two minutes faster than the last (much flatter!) half, so we’ll count that a win!

image

I even got my first real medal! I love the Tiffany necklace I earned at the last race, but there is something pretty cool about a big, heavy medal!

image

Not to be outdone, the rest of my family had a pretty good weekend, too! Emma Clare came home with four medals from her gymnastics competition, Turner finished out the basketball season with a celebratory medal, and Clay earned a special achievement medal at work on Friday! What a wonderful weekend for our family.

Share

Name That Bib | Rock and Roll Half Marathon

irundc

According to the website, as I sit and type, there are just over 4 days and 9 hours until the Rock and Roll Half Marathon for which I am registered. I can hardly believe it was six whole months ago that the idea to run this race was hatched as I ran with a friend through the district on a lovely, warm Columbus Day. As we talked it out, I went from a little ambivalent about the prospects to downright convinced that I should register for this race. Held on March 12, the race is just one day short of marking three years since I had my bilateral mastectomy. Though technically, the chemo had already killed the cancer in my breast, we didn’t know for sure, so that is the day that I officially consider myself to be cancer-free. Now here’s a little cancer speak technicality for you. People really “in the know” don’t like the phrase cancer free. Because really, you can never know. If you would have given me a form to fill out on September 15, 2012 and asked me to describe myself as either a cancer patient or cancer free, of course I’d have picked the latter. In fact, that wouldn’t have been accurate, I just didn’t know.

So in the cancer world, my status is technically NED for three years– No Evidence of Disease. There’s probably no cancer there, but we don’t know for sure– it could just be too small to detect. But as far as we can tell, there is no evidence of cancer. Which makes March 13 my NED-iversary. Catchy.

That’s all background for the question I have to pose. Back in October, I was stopped in my tracks by the option to personalize my bib. The only thing that fit in the character limitations that marked such a celebration was “cancer free.” But even without the hangup of cancer free vs. NED, I didn’t have the confidence to put that on a bib I wouldn’t be wearing for another six months. A lot can happen in six months. But nothing happened! I’m still just as NED as I was in October. Back then, I decided not to personalize it, leaving myself the option for a custom job with a Sharpie on race day. So, friends, help a girl out. What should my bib say? I’m leaning toward (NED)3, but knowing that people sometimes cheer for you based on the name on your bib, I’m not sure I want to be known as Ned. Makes me think of Ned Flanders, and then words like okely-dokely start popping in my head… Comment here or on Facebook, all reasonable (family friendly!) options will be considered! And the countdown is on– 4 days, 9 hours, one minute…

 

Share

Running, Motherhood, and Breast Cancer

image

 

I won’t rewrite the whole post here, but be sure to check out my new post on the Cure Community page. It’s a little bit about running, but a lot about the realities of being a mom with cancer, all inspired by the Melissa Etheridge song, I Run for Life, which randomly popped up on a Spotify playlist a few years ago. (Kleenex alert: Mom, you might want to skip this one. You know, the realities of having a child with cancer and all…)

Share

Department of Defense Breast Cancer Research Program | My Consumer Story

department of defense breast cancer research program consumer jamie holloway

Well, isn’t that cool. It seems like I’ve had a lot of surreal experiences lately– and I’m still new enough at all this to think it’s pretty cool. That’s my face on the home page for the Army CDMRP– Congressionally Directed Medical Research Programs. It feels like kind of a big deal to me! (Of course, I’ve been a bit of a slacker, or rather I’ve been totally overrun by my kids’ activities, so I’m now the fifth slide to load on the page. Be patient if you want to check it out!)

I’ve talked about the DOD Breast Cancer Research Program before, it’s a congressionally funded research program that is administrated by the army, the army is NOT using their budget to fund breast cancer research. This program is very forward thinking both in the design of the awards, which are created to fund high risk/high reward projects and early career investigators, and in the inclusion of “consumers” (patient advocates!) on the peer review panel.

I was asked to share my story as both an awardee and now a consumer reviewer for the BCRP. I won’t rewrite it here, but suffice it to say, I was honored to be asked. As a first time consumer reviewer, I had worried that the scientists on the panel might not value my input, but have always been impressed by the way the scientists give value to our comments and help us understand the tricky, science-y parts of the applications. I can’t say enough good things about this program, please head over and read my consumer story!

Share

The Great Mammogram Debate | Another Year, Another Issue

Screenshot image from JAMA video.

Screenshot image from JAMA video.

Last fall when I sent the kids back to school, I took a little time to jump into the mammogram debate. A paper had just come out in the journal Cancer indicating that looking at a preponderance of data with the proper statistical analysis showed that mammograms do, in fact save lives. Worth reading if you’re new to RLC or just don’t remember, like me. I re-read it in preparation for writing this post. Loved the prophetic foreshadowing near the end: Somehow, I doubt this will be the last word in the great mammogram debate.

Not the last word, indeed. Just over a year later, the Journal of the American Medical Association published a new paper on mammograms, leading the American Cancer Society (who publishes the journal, Cancer, referenced in that last post, by the way) to change their recommendations for mammography. For a quick and easy overview, JAMA made this video. It is definitely worth the four and a half minutes it takes to watch it, and be sure to watch it with the narration, too.

This debate is a tough one, and I feel like everyone and their brother has already weighed in. The JAMA piece points out that the decision of who gets mammograms and how often involves the delicate balancing of benefits and harms, not unlike most medical diagnostics and treatments. They boiled down the significant potential harms to two categories: anxiety of false positives and overdiagnosis/overtreatment.

Screenshot images from JAMA video.

Screenshot images from JAMA video.

The Washington Post published an excellent opinion piece on the first issue. The title read simply: Don’t worry your pretty little head about breast cancer. That pretty much says it all– Marissa Bellack eloquently and with historical references pointed out the fallacy that has existed throughout time that women are too fragile to handle such anxiety and would somehow be better off not knowing about an actual life threatening diagnosis if it meant avoiding the anxiety of awaiting results that might come back with no evidence of cancer. The “don’t worry your pretty little head” line is perfect, exposing the ridiculous notion that avoiding worry is a valid reason to forgo screening that has been demonstrated to prolong life.

The second issue, overtreatment and overdiagnosis, is the only real consideration in my mind. It is the notion that mammography is so good that it finds tumors that are so slow growing and indolent that they would never spread to threaten the woman’s life. This is not a failure on the part of mammograms, rather, it is a failure on the part of research. Increasing research is focused on distinguishing which tumors will be the aggressive, progressive, life threatening tumors, and which would stay tiny and live happily contained to a woman’s breast until she dies of something else as a very old lady. The ACS conclusion is that biennial (every two years) screening after 55 will combat this problem, so that mammograms will note the difference in the fast growing tumors. Even though this recommendation is supported by data, it makes me pretty nervous. This is a place where I think bench and clinical research are going to need to step up, research is going to be our only way to really conquer the problem of overtreatment in early cancer or even pre-cancerous breast lesions like DCIS.

So what to do, my friends? To all my young friends who have asked, I refer you to my reflections from the Society of Women’s Health Research Meeting I attended where I learned so much about 3D mammography. I don’t disagree with the data presented by the JAMA paper (or the data collected by the USPTF, which doesn’t recommend mammography until age 50) that show little benefit in the youngest population of currently screened women. They have amassed and evaluated a huge collection of data to reach these conclusions. BUT this huge collection of data obviously took a lot of time to collect, which means that it is made up almost entirely of patients receiving traditional mammograms (and many of them even the old school film variety, at that).  What I learned at the SWHR meeting taught me that 3D mammograms do a much better job of finding tumors often missed by traditional mammography in women with dense breasts, which are more likely to be found in younger women. I think once there is a large data cohort of young women analyzed exclusively with 3D mammography, we will find benefit in screening that population as well. Incidentally, 3D mammography also reduced the call backs for additional diagnostics, thus reducing all the worry form those ladies’ pretty little heads about something that ends up not being cancer. So, young friends, I say pay your fifty bucks and keep on getting your 3D mammograms.

Yes, I think looking at the data is a good idea. But one must realize that the limitations of the data (not looking at 3D mammos in young women) and realizing that overly paternalistic (don’t worry your pretty little head) conclusions can not only lead to significant confusion, but also to the missed diagnosis of significant disease. Yes, I’ve had young friends– at least two just this month– who have gone through the stress of a false positive from a routine mammogram. But I also have young friends who are alive to raise their children because an aggressive tumor was treated after discovery on a routine mammogram. Anxiety while awaiting the results of what turns out to be nothing sucks. Know what sucks worse? Dying too young of something that could have been treated if anyone knew it was there in time.

*I forgot to even mention the clinical exam guideline. That got dropped from most recommendations a while ago because there was not clinical evidence to show its benefit. That said, I think most docs are still going to do it at your annual OB/GYN exam because they keep talking about the other stuff they’re supposed to cover while they’re doing it. I don’t consider it to be a big issue, except perhaps a sad commentary on the fact that doctors have so little time for patients that they can’t spend the extra 30 seconds on that kind of exam…

Share

Breast Cancer Awareness | Middle School Style

image

So apparently my sweet girl and some of her friends decided that they would all wear pink today. Because breast cancer.

Probably everyone reading this knows I’m not much into pink for the sake of pink. Another thing I’m not into? Crushing the good intentions of an eleven year old with my anti-pinkwashing angst.

And so (I hope) I made the best of the situation and explained awareness without action is a little empty once everyone is already aware. Since middle schoolers don’t need to head out for an annual mammogram, we decided to look for something that middle schoolers could do. We brainstormed some ideas of things kids could do if they knew someone with breast cancer or if a friend’s mom had breast cancer. We talked about it Wednesday, but then I didn’t prompt at all when she was making the poster last night. Things like “bring them dinner,” “watch their kids” and “talk about things you would normally talk about” were on her list of how to be a good friend in a tough time. Part of me hated helping her make that giant pink ribbon. But if I learned one thing last October, it’s that the pink is already there, I might as well make it work. So today, bedecked in the fluffy pink skirt that I made for her years ago along with pink leggings and pink fringe boots, she shared a poster with her homeroom class to help them understand how to help a friend whose family has been affected by cancer. And I couldn’t be prouder.

Share

Celebrating Milestones and Lingering Doubts | CURE Magazine

image

I think you all know by now that I’m all about setting little goals and milestones and celebrating them in ways big and small. Some celebrations require a little more forethought, and so I’ve come up with something to celebrate three years cancer free this spring. The picture is your hint, head on over to CURE Magazine to get the details!

Share

Big Week | CURE Magazine and Scary Mommy

run lipstick chemo jamie holloway cure magazine scary mommy

I know this probably isn’t news to those of you who follow me on Facebook and Twitter, but in case social media’s just not your thing, I thought I’d put an update here, too…

Monday my first post went live on the CURE Magazine’s online community! CURE Magazine is resource for cancer patients, survivors, and caregivers. You can pick up a copy in an oncologist’s office, and they offer free subscriptions if you fill out the included subscription card. I’m not in the print version (yet! One can always dream!) but they approached me a few weeks ago to contribute to the online community of writers, and I couldn’t be more thrilled. Being part of this publication means that people who truly understand my point of view or might benefit from my experiences will be the primary audience, and that’s huge! The piece that I wrote for them this week is a brand new piece– The Indignity of Breast Cancer. Though I’ve never been to New Orleans in March, it’s a little story about how I’ve earned more than 100 pair of Mardi Gras beads the good old fashioned way! (And why I’m totally ok with that.)

Wednesday I was featured on Scary Mommy, a collective blog that’s described as “A parenting website for imperfect parents” and “is intended for people who have a sense of humor, an appreciation for sarcasm, and wear panties that don’t easily get in a wad.” Sometimes irreverent but always funny, I enjoy reading so much of what they feature. They picked up my post from a couple weeks ago– “Ten Things Breast Cancer Taught Me” and republished it this week with a really cheesy stock photo of ladies wearing pink shirts. But still, they published it! Though they may not be my target cancer-y audience, they have a huge readership, so being featured on their site was super cool!

I’ve posted links on the right– the blue CURE Magazine logo will take you to my community page, so as I post more there, it should link to a list of all my articles there. And even though there’s just one Scary Mommy post, I’ll probably leave their signature crown up forever because it’s so cool! If you haven’t read them already, check them out!

Share

It's an Honor Just to be… Alive?

image

Well, kids, it’s finally happened. I went to a major sporting event in October. The family headed to Morgantown, West Virginia to watch Clay’s Oklahoma State Cowboys take on the Mountaineers in football. We got there early and Emma Clare, who has just made the Swanson Cheerleading Squad, had a blast watching the cheerleaders from both teams before the game. Always one to notice accessories, she pointed out very quickly that perhaps the WVU cheerleaders were wearing pink hairbows and using pink pom poms for breast cancer month. I nodded, and muttered to her that if her cheerleading squad ever wanted to participate in Breast Cancer Awareness Month, we were going to make sure that they did more than just use pink pom poms. (Would love your ideas on that one, but free babysitting services for patients with young kids might just be up there on my list!)

During the game, they highlighted one of the doctors from the university’s breast care center and of course had the obligatory moment when they had a handful of breast cancer survivors on the field wave and get some (pink, of course) roses. I have nothing against anyone honored like that. Those ladies were treated like queens for the day and had a blast, and should the St. Louis Cardinals need anyone to honor, I’m your girl! Just sayin. After that, they asked anyone in the stands who was a breast cancer survivor to stand to be honored as well. I sighed as I heard my mother in law and daughter’s cheerful words, insisting, “Stand up! Stand up!” They were proud of me, they love me. So I stood. (Very briefly.) I’m not sure why it felt weird. But it did– standing with everyone clapping felt weird. And then Emma Clare summed it up perfectly. “That’s an awfully big deal just for staying alive.”

Clay assured me that even though it felt weird, they were, in fact, quite glad I did manage to stay alive. With nearly 40,000 women dying of breast cancer every year (that’s 108 women every day) I guess just staying alive is kind of a big deal. It makes me very thankful to those who have gone before me– researchers, clinicians, and especially those who have participated in clinical trials– who said yes– making it possible for me to stand with all those other people who stayed alive. But more than that, it makes me long for the day when research has come far enough that it’s just not that big of a deal to manage to stay alive.

Related Posts Plugin for WordPress, Blogger...
Share
Follow

Get every new post delivered to your Inbox

Join other followers: